Latest / The Eko Lens Podcast / Fighting Blindness, Changing Lives
Transcript
- speaker-0: Welcome to the Echo Lens, the podcast where we view assistive technology through the eyes of the experience. I'm your host, Kinesha. And every episode we explore how dignity, design and innovation intersect to empower blind and low vision communities. We're not just reviewing tech, we're reframing it. This is a space for truth telling, for honoring the voices that often go unheard and for challenging the industry to do better. Whether you're a developer, a user, or someone who just simply believes in equity, you're in the right place. This is the ECHO lens. Let's take a closer look. Today we have Julie. Julie Gritzmacher is a master's level social worker, has a dual master's in social work and public health, and has more than 20 years experience advocating for equitable access to delivery of healthcare services. Her work has led her academic medical facilities, federally qualified health centers, academia, and nonprofit organization. Servicing communities impacted by HIV and AIDS, premature and low birth weight babies, and high risk pregnancies. She has experience building, implementing, and evaluating educational programs from scratch, first in academic. and then with medical resins and then at Prevent Blindness with the ASPECT program for the visually impaired and the blind and their allies. So Julie currently serves as the Director of Patient Advocacy and Population Health Initiatives at Prevent Blindness and is passionate about reducing all barriers to eye care. Julie, thank you so much for coming on today. We're super excited to have you know, a national presence like Prevent Blindness in the room with us today. speaker-1: Thank you so much for having me. an honor. speaker-0: So Julie, we connected when we reached out to prevent blindness and we wanted to see, know, like, what are some of the things that you're offering and how can we get the connection and help each other when as here at Echo Vision Foundation, we're doing this work to bridge that gap between tech and privacy first and bridge that gap for the blind and low vision community. So Julie, what is... your personal connection to the blind and low vision community and how did you get into the work that you do today? speaker-1: My personal connection is really it was a happy accident. I ended up starting at Prevent Blindness six years ago and I had a full career in public health and social work as you mentioned and I had never worked with a low vision or blind community. I myself am sighted, had my first pair of glasses at 40, so really took my vision for granted. and never considered it as part of whole health, you know, from a public health model. It was just not in my, you know, repertoire. So when I started, had, it was an incredible opportunity to build a program from scratch. And this was centered around building advocacy skills for the visually impaired and blind. And this was kind of a ⁓ title change a little bit, you know, for the services that were offered by Prevent Blindness at that time. So we had always done. advocacy work, a long history of patient advocacy starting way back around 1908 when we were advocating for prevention of infant blindness. And then over the scope of all of these years, it has grown to ⁓ trying to prevent blindness where possible. But we know, of course, not all vision conditions are preventable. So then also advocating across the lifespan to making sure that technology is there. policies are representative and inclusive for the visually impaired and blind. And so we are a national organization really serving across the lifespan, really trying to advance equitable access and treatment for the low vision and blind community. And so it is through the building of the aspect program, which I mentioned is a advocacy skills building program that focuses on storytelling. So how to tell your story. to create positive change, to be persuasive, to convince minds, convince policymakers, pharmaceutical companies, those in tech. So wherever you choose to focus your efforts and everybody has a different goal, but that's really the aim of the program. And it's been going on now for six years. It's online primarily and we've trained about 300, over 300 individuals to date. speaker-0: love that because it gives them a sense to be able to hold power to their story and your story changes over time too, right? As you go through different experiences, as maybe your vision loss progresses or changes and you're able to voice the resilience of that in a space. I love that. And when you're doing it and learning with other people, right? It makes it a little bit easier knowing like, I can bounce these ideas off you or try to share my story in this way. Maybe, you know, someone wants to throw in a little comedy or something like that, you know, however that may be. So that's a really cool program. Can you tell us a little bit more about that program if someone were interested in it? speaker-1: Absolutely, and first I just want to respond to your comment. It's so true that everybody has a voice and everybody has a story, and really it's about reflecting on your own journey. And as we grow and change, and as vision loss might change, your own personal goals change. And so we equip participants with the tools to be able to develop a story in five minutes, knowing that it's just a starting point. and that one will continue to revise over the course of many years. And we also really want to propagate the idea that there's not just one voice or one style that is the best and I'll be all the gold standard. It's important to be authentic and true to yourself. And so we do do a good job of exposing participants to many different styles of storytelling. Pick and choose what works for you, what feels authentic. and that exposure can be really quite skills building. And then your next question was about. speaker-0: Yeah, about the program, if someone was interested in how to get involved in that ASPRIC program, what does that look like? speaker-1: Yeah. So we have an online application process and so anyone interested can visit our online portal. It's preventlinus.org and it's the aspect program. That's A-S-P-E-C-T aspect. And you can apply online and that goes straight to my inbox. And then I will reach out and schedule an interview with you. And ⁓ we typically train two cohorts at a time in the August to December range. So it usually will span 10 weeks or 10 sessions, and that's four months. speaker-0: services does prevent blindness like provide the folks. speaker-1: Yeah, so we provide, we focus primarily on education. ⁓ And so that education is for geared more mostly to the public, sometimes to healthcare professionals. So that can come in the form of fact sheets or webinars or toolkits. ⁓ And because we're national in scope, it's really quite broad. ⁓ We also have ⁓ a Living Well with Low Vision website. that's livingwellwithlowvision.org. preventblindness.org. I'm sorry, excuse me. Lowvision.preventblindness.org. And that is a really great website. geared towards patients, caregivers, and health care professionals. So there's lots of resources there. We have six affiliates who are located in different states throughout the US. And they do more of the on the grounds, know, vision screening, direct services. But here in the national level, we have about 30 or so national staff. And so we're mostly focused on education or policy, know, advocacy work. We do have, you know, representation in DC as well. speaker-0: I'd love to hear more about the policy and advocacy work in DC because we don't really talk about that as much as we should. Are there things that are in motion right now to really help the blind and low vision community or is it something that y'all are advocating for and we're working with legislators to introduce bills or anything like that? speaker-1: Yeah, PreventLinus really has different pockets of, I would say, leadership. So we, there are things that we lead on, there are things that we support on and we collaborate on. And so one of the things that we're leading on right now is we, we drafted a bill several years ago that has been introduced in the house twice. And this is specific to children. Cause right now there is no mandatory screening of children. in all 50 states. So it varies quite significantly by states and what the law is. And so this bill would make it so that all 50 states receive funding to implement vision screening for children as they age, as they grow every year. And that's really important because we know vision impairment can show up, you know, as children grow. And so that is currently hoping to be. reintroduced again, but it has bipartisan and bicameral support. So that's something that it's called the EDVI Act, Early Detection of Vision Impairment for Children Act. The other thing that we always advocate for at our annual advocacy day is for funding to go to the Centers for Disease Control and Prevention, and that's around funding for glaucoma. I believe diabetes is also included in that initiative. It's a small amount that is given every year. It's around 4 million that has been given every year. And we, through our advocacy efforts, we were able to bring it up to 6.5 million one year, and then now it's back, I believe, to 2 million. So it's not a lot of funding. It's just a little tiny drop in the bucket. Those are some of the efforts that we lead on. So again, our mission is really prevention and preservation of site first. But then we also have, we sit on about 26 coalitions and through that coalition work, we support, join sign on letters and we support other initiatives geared towards, you know, like the non-medical device act, for instance, you know, the services that really benefit the low vision blind community. speaker-0: That is so interesting because we need those voices that are going to go right to legislation and be like, hey, this is what's up. I did another podcast with someone and we were talking about a similar, a similar topic, like how she said, and I said that if we would have had early prevention, like rather, you know, maybe going to the eye doctor when I was younger, I started wearing my glasses at 10, but like I probably needed them way sooner and we probably would have caught my retinal disease. a little bit sooner so we could slow it down, which is really interesting. Okay, so what kinds of assistive technology are you seeing folks use in your aspect program? Or what kind of accommodations are you making for the aspect program for folks who need it? speaker-1: So as far as the technology I've seen people using, there's a lot of currency readers. So we have a program called ICANN, which is a social meetup every month among the graduate community. And there's always one woman who shares a resource, and she's so good at it. It's usually an app of sorts. And so I can't remember all of what she shares each time, but it's always informative to me. Navigation. apps and currency readers are great ones that she's shared recently. That's what comes to mind at the moment. As far as some of the accommodations I've made for the training program, so it is online over Zoom. And so I just make sure that if I'm using a PowerPoint, I'm explaining everything that's on the screen, reading everything that's in. in writing. I provide everything in PDF and Word documents, making sure that things have closed captioning, recording all of the videos. I provide audio overviews of what's to come in the next meeting. I do that ahead of time, giving everything ahead of time with plenty of time to review the materials as well. speaker-0: I love that. And do y'all have like focus groups that you do with the youth maybe at the end of the cohort to see, know, what can we change or what should we focus on next time or how do you continue the evolution of the program? speaker-1: So right now the program is primarily adult focused. So we have had a few like 17 year olds participate, but that's been the youngest person so far. We're thinking about maybe adapting for a youth audience in the future, but haven't done so yet. A sort of practice of evaluation includes in a post-evaluation survey. And in that we will ask, you know, really specific questions about what was most valuable to you. And we've done that since the very beginning, the first cohort in November of 2020. And it has been incredibly valuable. And after every round of evaluations, we've made changes to the curriculum. So it's really been a reflection of what has been requested by the participants. Additionally, 2023, believe it was, hired a subcontractor to host focus groups. and one-on-one interviews with graduates of the program. And that was really where we got some ⁓ additional very comprehensive quotes and content and reflection. And again, integrated that into the curriculum and the changes that were made. speaker-0: I love that so much. It's so important to do that, you know, reevaluation to see what's working, what's not working, and just the aspect for adults to have the space to go through, like you said, right, to be able to build their voice and know how to share their story in a manner that's comfortable for them. What is your hope for the next generation of your cohorts? Like, what are you really looking forward to in the cohorts coming up? speaker-1: So we're at a really exciting juncture where it's possible that we will move away from only online and do some in-person trainings. And so I'm excited to think about how we will adapt that. So we'll have to condense the training and where we will do that, perhaps starting with our state affiliates and where they're located. There's some in Texas and Ohio and North Carolina, but... We have heard from participants that they would really love that in-person connection. And yet we also know that there are folks that prefer not to travel. And so we want to offer both options. So that'll be a new addition coming up and really focusing on the things that again and again come back as the most powerful components of the training program, which is storytelling craft really. The practice of putting it together yourself and telling your own story is one that is new for a lot of people. But then hearing so many other stories and learning so much about various eye conditions, those are the things that really are very empowering to the participants that can really like set them on a different track and really empower them to continue to advocate in many different ways and just demystifying advocacy. as well to say it's just persuasive communication. know, so however you choose to do that, whatever change you want to see, it's just important that you use your story as the starting point and as a tool for making that change. speaker-0: I definitely relate with that to like being in space with folks to be able to hear their story. Even in space like this, I've learned about so many different eye conditions because before, eye experience, blindness, you know, it wasn't really something that was on my radar. Not like exact things of knowing what different conditions and knowing about the providers and all these accessibility tools and all these foundations like yourself that really help on it. So it's definitely been. been a learning journey for that as I'm sure that it is for a lot of the folks that you work with. So Julie, as we're wrapping up here from the work that you've been doing for the last, how many years did you say? Eight, six? Six Six years. Yep, six years. And the things that you've learned from others, like what is like a message that you would like to leave with our community and our listeners? speaker-1: That it's really worthwhile to review your own lived experience when it comes to vision loss and blindness, it can be painful memories that are conjured when you're thinking about your own journey. And also, I want to say that it's incredibly validating and very meaningful for one to share that experience, so to give voice to it and to not. Just keep it to yourself. And because I have witnessed the shift in people in hearing other people's perspectives, what they've had to go through, what they have overcome, are still working with, are challenged by daily. But in essence, finding the meaning in it all will help other people. And that is something that I have just absolutely taken away from the aspect program is how much of a ripple effect it is. to give voice to your own journey and challenges and to help other people through the process. speaker-0: Yeah, and I definitely think too that for those cohort groups that they probably have another emphasis on the community that their cohort gives them, right? Like these are the folks that I'm working closely with over the next few months. I'm going to get to know them really good. And now I have folks that I can rely on and call on like if I need some help or some guidance or just to talk about someone else who understands what you're going through. speaker-1: It's so true that there are so many people who join the program, they don't know anyone else who has low vision or blindness until they join. And then it's just like, wow, I don't have to explain anything. This community just gets it. And then they have friends for life, you know. And it's just my favorite thing to hear about how people have connected outside of class and continue to collaborate and do, you know, visit each other and do various things. So it's really incredible. speaker-0: I love that too. Julie, thank you so much for being on with us today. Like y'all are doing such amazing work at the foundation. You know, we're excited to be able to partner with you wherever that looks like we've talked about in the past. just to see continue to follow this program and see where it's going. It's definitely super cool. So thank you, Julie, for joining us on the Echo Lens where we view assistive technology through the eyes of lived experience. If today's conversation sparked something in you, can share it, rate it, and keep the dialogue going. To learn more about the beautiful project or to support our work, can visit eccovisionfoundation.org. Next time, stay curious, stay connected, and keep seeing with love. Thanks, folks.